› Forums › General Melanoma Community › Zelboraf a bust; going for broke with Yervoy
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Gpopham.
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- October 14, 2011 at 3:32 pm
Haven't been around much lately. Last week we got the bad news confirming that Don did not respond to the Zelboraf. There was progression; he now has brain mets: at least 3 of them. Dr. L. said the scan was not as clear as they'd like, but there was at least 3. Because there are multiple lesions and he's not sure if there may be others, he has recommended Whole Brain Radiation along with radiation on the spine and a course of Yervoy. We've been told this is basically our last shot at recovery.
Haven't been around much lately. Last week we got the bad news confirming that Don did not respond to the Zelboraf. There was progression; he now has brain mets: at least 3 of them. Dr. L. said the scan was not as clear as they'd like, but there was at least 3. Because there are multiple lesions and he's not sure if there may be others, he has recommended Whole Brain Radiation along with radiation on the spine and a course of Yervoy. We've been told this is basically our last shot at recovery.
Don goes in today for his first infusion of Yervoy. They are still working on how soon he will start radiation treatments.
Does anyone here have anything they can tell me about side effects and/or effectiveness of Whole Brain Radiation?
Thanks!
Michelle, wife of Don
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- October 14, 2011 at 6:21 pm
Michelle,
I am so sorry to hear about the progression. Oh how I hate this disease and the constant issues tormant in your life. I guess the only thing we can do is to keep fighting and hopefully just figure this out.
I wish the scan isn't clear enough to specifically tell you what to do. I know that my tumor is large enough and deep enough that Plan B is the crainectomy instead of the first option. Different people seem to have different side effects and different effectiveness. Only 1 Dr suggested WBR and I turned her down at this time. I was told that they would do SRS for at least a few more if they happen to show up on Monday during the radiation and is hiding even more, but not planning on this appearing. Each of us is so different that we could have example issues and we're still going to react differently. I know your just looking for hope. wish someone could give you answers.
I'll send you an e-mail later.
Hugs,
Linda
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- October 14, 2011 at 6:21 pm
Michelle,
I am so sorry to hear about the progression. Oh how I hate this disease and the constant issues tormant in your life. I guess the only thing we can do is to keep fighting and hopefully just figure this out.
I wish the scan isn't clear enough to specifically tell you what to do. I know that my tumor is large enough and deep enough that Plan B is the crainectomy instead of the first option. Different people seem to have different side effects and different effectiveness. Only 1 Dr suggested WBR and I turned her down at this time. I was told that they would do SRS for at least a few more if they happen to show up on Monday during the radiation and is hiding even more, but not planning on this appearing. Each of us is so different that we could have example issues and we're still going to react differently. I know your just looking for hope. wish someone could give you answers.
I'll send you an e-mail later.
Hugs,
Linda
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- October 14, 2011 at 6:21 pm
Michelle,
I am so sorry to hear about the progression. Oh how I hate this disease and the constant issues tormant in your life. I guess the only thing we can do is to keep fighting and hopefully just figure this out.
I wish the scan isn't clear enough to specifically tell you what to do. I know that my tumor is large enough and deep enough that Plan B is the crainectomy instead of the first option. Different people seem to have different side effects and different effectiveness. Only 1 Dr suggested WBR and I turned her down at this time. I was told that they would do SRS for at least a few more if they happen to show up on Monday during the radiation and is hiding even more, but not planning on this appearing. Each of us is so different that we could have example issues and we're still going to react differently. I know your just looking for hope. wish someone could give you answers.
I'll send you an e-mail later.
Hugs,
Linda
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- October 15, 2011 at 2:25 pm
I don't think that SRS would be a valid option in Don's case. Once he has progression in an area, it usually grows like gangbusters. Dr. L. is right to worry about tumors he can't see and/or microscopic tumors. I would much rather hit them all at once. Still scary as all heck, though.
I really hope your situation is much better handled and you get back to NED soon! 🙂
Michelle
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- October 15, 2011 at 2:25 pm
I don't think that SRS would be a valid option in Don's case. Once he has progression in an area, it usually grows like gangbusters. Dr. L. is right to worry about tumors he can't see and/or microscopic tumors. I would much rather hit them all at once. Still scary as all heck, though.
I really hope your situation is much better handled and you get back to NED soon! 🙂
Michelle
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- October 15, 2011 at 2:25 pm
I don't think that SRS would be a valid option in Don's case. Once he has progression in an area, it usually grows like gangbusters. Dr. L. is right to worry about tumors he can't see and/or microscopic tumors. I would much rather hit them all at once. Still scary as all heck, though.
I really hope your situation is much better handled and you get back to NED soon! 🙂
Michelle
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- October 15, 2011 at 1:04 am
Michelle, I am saddened to read this news. I don't have any specific info about WBR side
effects. However, here is some info about brain mets and radiation treatment in general:
http://www.cancer.gov/clinicaltrials/results/summary/2006/stereotactic-radiosurgery0806I hope that Don will respond well to Yervoy.
Take care
Frank from Australia
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- October 15, 2011 at 1:04 am
Michelle, I am saddened to read this news. I don't have any specific info about WBR side
effects. However, here is some info about brain mets and radiation treatment in general:
http://www.cancer.gov/clinicaltrials/results/summary/2006/stereotactic-radiosurgery0806I hope that Don will respond well to Yervoy.
Take care
Frank from Australia
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- October 15, 2011 at 1:04 am
Michelle, I am saddened to read this news. I don't have any specific info about WBR side
effects. However, here is some info about brain mets and radiation treatment in general:
http://www.cancer.gov/clinicaltrials/results/summary/2006/stereotactic-radiosurgery0806I hope that Don will respond well to Yervoy.
Take care
Frank from Australia
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- October 15, 2011 at 4:11 am
Did he have the positive test for BRAF mutation? How long was he on Zelboraf? We are still waiting to see if my dad will test positive for that.
My dad's first treatment in April was WBR due to six brain lesions, and in his case made a big diiference in his ability to get up and walk around. He did lose most of his hair. His fatigue set in about two weeks into it. His Temodar treatments bagen in May as radiation was ending, so it is hard to distinguish further side effects from one another, though he did stop eating well and lose about 25#. His persoality and judgement have changed some, but it is hard to say if that was independednt of the changes brought on by tumors. Still on Temodar with mixed results.
Best,
DF
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- October 15, 2011 at 4:11 am
Did he have the positive test for BRAF mutation? How long was he on Zelboraf? We are still waiting to see if my dad will test positive for that.
My dad's first treatment in April was WBR due to six brain lesions, and in his case made a big diiference in his ability to get up and walk around. He did lose most of his hair. His fatigue set in about two weeks into it. His Temodar treatments bagen in May as radiation was ending, so it is hard to distinguish further side effects from one another, though he did stop eating well and lose about 25#. His persoality and judgement have changed some, but it is hard to say if that was independednt of the changes brought on by tumors. Still on Temodar with mixed results.
Best,
DF
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- October 15, 2011 at 1:56 pm
Dearfoam,
My husband had tried to get into the GSK BRAF/MEK trial back in May, and had a sample taken from a liver met at that time. The GSK version of the BRAF test gave us a positive result, but Don ended up washing out of that trial because of quick progression of his disease.
Flash forward to August: a sample from that tissue sample tested for the other trial was sent to PLX for qualification for the Zelboraf extended access trial. His sample tested negative based on the PLX test. His case was appealed and he was allowed on the trial based on his previous positive test.
Apparently, the PLX result was the correct one.
I'm not too concerned about the hair loss: His was just growing back after having been on chemo, so it's not like we're not used to his baldness…
So far, the brain lesions seem to not have made too much difference in Don's behavior. I'm hoping that the treatment won't cause more damage. 🙁
MIchelle
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- October 15, 2011 at 1:56 pm
Dearfoam,
My husband had tried to get into the GSK BRAF/MEK trial back in May, and had a sample taken from a liver met at that time. The GSK version of the BRAF test gave us a positive result, but Don ended up washing out of that trial because of quick progression of his disease.
Flash forward to August: a sample from that tissue sample tested for the other trial was sent to PLX for qualification for the Zelboraf extended access trial. His sample tested negative based on the PLX test. His case was appealed and he was allowed on the trial based on his previous positive test.
Apparently, the PLX result was the correct one.
I'm not too concerned about the hair loss: His was just growing back after having been on chemo, so it's not like we're not used to his baldness…
So far, the brain lesions seem to not have made too much difference in Don's behavior. I'm hoping that the treatment won't cause more damage. 🙁
MIchelle
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- October 15, 2011 at 1:56 pm
Dearfoam,
My husband had tried to get into the GSK BRAF/MEK trial back in May, and had a sample taken from a liver met at that time. The GSK version of the BRAF test gave us a positive result, but Don ended up washing out of that trial because of quick progression of his disease.
Flash forward to August: a sample from that tissue sample tested for the other trial was sent to PLX for qualification for the Zelboraf extended access trial. His sample tested negative based on the PLX test. His case was appealed and he was allowed on the trial based on his previous positive test.
Apparently, the PLX result was the correct one.
I'm not too concerned about the hair loss: His was just growing back after having been on chemo, so it's not like we're not used to his baldness…
So far, the brain lesions seem to not have made too much difference in Don's behavior. I'm hoping that the treatment won't cause more damage. 🙁
MIchelle
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- October 15, 2011 at 4:11 am
Did he have the positive test for BRAF mutation? How long was he on Zelboraf? We are still waiting to see if my dad will test positive for that.
My dad's first treatment in April was WBR due to six brain lesions, and in his case made a big diiference in his ability to get up and walk around. He did lose most of his hair. His fatigue set in about two weeks into it. His Temodar treatments bagen in May as radiation was ending, so it is hard to distinguish further side effects from one another, though he did stop eating well and lose about 25#. His persoality and judgement have changed some, but it is hard to say if that was independednt of the changes brought on by tumors. Still on Temodar with mixed results.
Best,
DF
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- October 17, 2011 at 10:36 am
I can't give you any info on the WBR, but just wanted to let you know we are thinking of you both and wishing you all the best.
Hugs ((()))
Maria
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- October 17, 2011 at 4:58 pm
Michelle,
i am speechless…it seemed as though zelboraf worked on everyone…i am sorry
it seems don and i are very unlucky…i had to stop zelboraf for awhile due to overwhelmingly severe immune respnse
boots
.
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- October 17, 2011 at 4:58 pm
Michelle,
i am speechless…it seemed as though zelboraf worked on everyone…i am sorry
it seems don and i are very unlucky…i had to stop zelboraf for awhile due to overwhelmingly severe immune respnse
boots
.
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- October 17, 2011 at 4:58 pm
Michelle,
i am speechless…it seemed as though zelboraf worked on everyone…i am sorry
it seems don and i are very unlucky…i had to stop zelboraf for awhile due to overwhelmingly severe immune respnse
boots
.
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- February 21, 2012 at 2:02 am
I just finished Yervoy and am getting ready to start Zelboraf. I also have brain mets and have had whole brain radiation. For me, the whole brain radiation wasn't very effective, but I did have gamma knife surgery, which is a form of pinpoint radiation, which did help. Beware the side effects of the Yervoy were different for me with each infusion. I did have some success with the Yervoy though. Most of the tumors in my lungs shrunk, some by half. I did have new lesions that popped up during the Yervoy treatment though.
I would strongly reccommend looking into gamma or cyberknife as opposed to whole brain radiation. The side effects for me were mainly tiredness and hair loss, but it just wasn't effective.
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- February 21, 2012 at 2:02 am
I just finished Yervoy and am getting ready to start Zelboraf. I also have brain mets and have had whole brain radiation. For me, the whole brain radiation wasn't very effective, but I did have gamma knife surgery, which is a form of pinpoint radiation, which did help. Beware the side effects of the Yervoy were different for me with each infusion. I did have some success with the Yervoy though. Most of the tumors in my lungs shrunk, some by half. I did have new lesions that popped up during the Yervoy treatment though.
I would strongly reccommend looking into gamma or cyberknife as opposed to whole brain radiation. The side effects for me were mainly tiredness and hair loss, but it just wasn't effective.
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- February 21, 2012 at 2:02 am
I just finished Yervoy and am getting ready to start Zelboraf. I also have brain mets and have had whole brain radiation. For me, the whole brain radiation wasn't very effective, but I did have gamma knife surgery, which is a form of pinpoint radiation, which did help. Beware the side effects of the Yervoy were different for me with each infusion. I did have some success with the Yervoy though. Most of the tumors in my lungs shrunk, some by half. I did have new lesions that popped up during the Yervoy treatment though.
I would strongly reccommend looking into gamma or cyberknife as opposed to whole brain radiation. The side effects for me were mainly tiredness and hair loss, but it just wasn't effective.
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- February 23, 2012 at 1:47 pm
Just found this site. Yervoy has been a miracle for us. My husband was diagnosed in October 2010 and has been through a craniotomy for brain mets, whole brain radiation and chemo. He did not respond to the chemo so was referred to a clinical trial for ippilimomaub in March 2011 (now Yervoy). He has had excellent results with one round of treatment (4 infusions) with Yervoy. Minimal side effects and no evidence of disease advancement. 11 months out and brain MRI’s are negative and lung lesions have shrunk. We wanted to get the good news to others looking for treatments. God bless and we hope you are getting good results as well. -
- February 23, 2012 at 1:47 pm
Just found this site. Yervoy has been a miracle for us. My husband was diagnosed in October 2010 and has been through a craniotomy for brain mets, whole brain radiation and chemo. He did not respond to the chemo so was referred to a clinical trial for ippilimomaub in March 2011 (now Yervoy). He has had excellent results with one round of treatment (4 infusions) with Yervoy. Minimal side effects and no evidence of disease advancement. 11 months out and brain MRI’s are negative and lung lesions have shrunk. We wanted to get the good news to others looking for treatments. God bless and we hope you are getting good results as well. -
- February 23, 2012 at 1:47 pm
Just found this site. Yervoy has been a miracle for us. My husband was diagnosed in October 2010 and has been through a craniotomy for brain mets, whole brain radiation and chemo. He did not respond to the chemo so was referred to a clinical trial for ippilimomaub in March 2011 (now Yervoy). He has had excellent results with one round of treatment (4 infusions) with Yervoy. Minimal side effects and no evidence of disease advancement. 11 months out and brain MRI’s are negative and lung lesions have shrunk. We wanted to get the good news to others looking for treatments. God bless and we hope you are getting good results as well.
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